The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

ME/CFS Blogger Nation

Total Pageviews

Follow by Email

Subscribe To

Followers

Tuesday, March 29, 2016

No, it's not a typo

http://solvecfs.org/i-thought-it-was-a-typo

I Thought It Was a Typo…

By Zaher Nahle, PhD, MPAVice President for Research and Scientific ProgramsSolve ME/CFS InitiativeAugust 21, 2015

During the course of interviewing for this position, I was reviewing the amount of government spending on ME/CFS. I came across a figure of $5.4 million in one article. I assumed the number must have been a typo. I thought, not only as a rational reader, but also as a scientist who directed a research laboratory and balanced budgets, that it must be $5 billion, with a "b," not million with an "m." After all, for a devastating illness destroying the lives of at least 2.5 million people in the United States alone and causing north of $17 billion per year in economic losses, a $5 billion expenditure seemed reasonable, if not absolutely necessary.

The real shocker, however, came the next day when I ran into that same$5 million figure from a separate, trusted source. My shock turned tooutrage on behalf of the patient community. Could it be true? Could the mighty U.S. government commit only $5 million for this devastating, woefully understudied disease with no cure, diagnostics or defined pathology? To put things in perspective, $5 million can barely furnish a modest core facility in one science department and is the individual yearly budget of hundreds of medium-size labs investigating other diseases. It is also a fraction of what Roche Pharmaceuticals, for instance, spends on Research & Development in a single week.

And just when you think that you have seen it all, now even thatmeasly $5.4 million was unashamedly stricken from the prospectiveSenate budget of 2016, the only disease to get such remarkable"attention." The sad irony lies in the stark contrast of how we generously commit tens of billions per year in (commendable) foreign aid to alleviate human suffering across the globe, but fail to invest crumbs in the wellbeing of our own vulnerable population, people with ME/CFS.

While I have never been one to subscribe to conspiracy theories, Ihave to wonder why the government continues to fumble repeatedly onthis particular issue. I'm reminded of the words of the science writerArthur C. Clark in 3001, The Final Odyssey: "Never attribute tomalevolence what is merely due to incompetence." ME/CFS patients are aproud and a resilient bunch who are not asking for handouts. They aremerely demanding what is their inalienable right: that theirgovernment invest in finding cures so that they can live dignified,productive and meaningful lives like everyone else.

At the Solve ME/CFS Initiative, we are doing all we can to fill thatenormous research gap and drive collaborations that foster promisingdiscoveries. That said, we insist on a clear, tractable andtransparent federal funding agenda for ME/CFS as the most effectivepath toward a cure. It is the responsibility of the government to find cures for diseases that afflict millions of its citizens, not theother way round. We are darn serious about that!

* * *I, too, have been told that I must be mistaken. If ME/CFS is as life-changing as I say it is, it must be getting lots of research money. If it's only getting $5M (in a good year), then it can't be as bad as I say it is.

Imagine the outrage if we told cancer patients that they could only have as much research as they could raise money for themselves. There would be no surgery, no chemo -- they would get the same hopeless nonsense we get, "it has a name; we can't do anything for you but send you home to wait to die."